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CHfather

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  1. I need help

    KEEP DOSING

    I NEED HELP

    WITH DOSING WHILE NOT IN CYCLE

    ANYONE?

  2. I'm pretty sure that there has been at least one person here who experienced temporary aphasia (loss of ability to understand or express speech) in relation to CH attacks. http://www.docguide.com/reappearance-hemiplegic-cluster-headaches-case-report-and-review-literature?tsid=5 Cluster headache (CH) is a rare and severe syndrome characterized by the recurrence of unilateral pain attacks, of short duration (15-180min), and associated with ipsilateral cranial autonomic symptoms. Although, not formally included in the International Classification of Headache Disorders, hemiplegic cluster headache (HCH) is an even more rare subtype of CH in which typical attacks can be accompanied by visual, sensory, and/or aphasic migrainous auras that have a variable propensity to evolve in reversible hemi-motor symptoms. After its first description in 2002, only few cases of HCH have been reported and many open questions about its prevalence and pathophysiology still need to be addressed. We describe a case of a 41-year old male that fulfilled the ICHD criteria for episodic CH who experienced atypical attacks characterized by concomitant acute onset of sensory aura, aphasia and hemi-motor symptoms. We also provide a concise review of the available literature and discuss the prevalence and the possible pathogenesis of CH with hemiplegic features.
  3. http://www.docguide.com/ketamine-infusion-combined-magnesium-therapy-intractable-chronic-cluster-headache-report-two-cases?tsid=5 BACKGROUND Chronic cluster headache (CH) is a rare, highly disabling primary headache condition. As NMDA receptors are possibly overactive in CH, NMDA receptor antagonists, such as ketamine, could be of interest in patients with intractable CH. CASE REPORTS Two Caucasian males, 28 and 45 years-old, with chronic intractable CH, received a single ketamine infusion (0.5 mg/kg over 2 h) combined with magnesium sulfate (3000 mg over 30 min) in an outpatient setting. This treatment led to a complete relief from symptoms (attack frequency and pain intensity) for one patient and partial relief (50%) for the other patient, for 6 weeks in both cases. CONCLUSION The NMDA receptor is a potential target for the treatment of chronic CH. Randomized, placebo-controlled studies are warranted to establish both safety and efficacy of such treatment.
  4. First of all, you don't seem to have oxygen. A proper oxygen setup will reduce your abort time very substantially, without medical side effects. Knowing you can abort most attacks within 10-15 minutes might help with the anxiety, too. Any neurologist who doesn't prescribe oxygen is not an expert. The idea that if you don't treat your episodic CH properly it will become chronic is, I believe, completely ridiculous. Talk about making you anxious! That just seems like a very uninformed thing for the doctor to have said. Lithium is recommended to be prescribed only for chronic cluster headache, because of the side effects and because it has been shown to cause significant rebound attacks when you stop taking it. The article, "Treatment of Cluster Headache," on this page would be worth reading for you, I think: https://clusterbusters.org/medical-research-reports-studies-case-reports-links/ I know of a person who had CH and also anxiety and was prescribed lithium. I don't remember the dosage. While I'm sure that lithium helps many people with psychological conditions, for this person it seemed to have no effect on the CH and it seemed to make her more anxious just to know that she was taking lithium, if that makes sense. Triptan pills are usually not effective for CH, because they take too long to work. Maybe your attacks would end in 30-45 minutes without it. A sensible doctor would prescribe at least the oral spray, and probably the injections. Not everyone thinks that triptans are a good idea, but if you have oxygen you could use the triptan for breakout attacks that aren't helped by the O2. The only way the pills seem to help people, as I underswtand it, is if they know what time their attacks usually come and take the pill an hour or so before that. That's what I am remembering. Many people find that taking melatonin at night helps with attacks. Since as I understand it melatonin is a prescription drug in some countries, you might not be able to get it. If you can -- start at 9mg/night and work up from there. Please consider the D3 regimen described here. It might be kind of daunting to read the information even though your English is excellent, but the basic ingredients are listed in a table and that's most of what you need to know. Because it is so effective at preventing cycles or at least reducing how bad things are during a cycle, I think it has reduced many people's anxiety about their cycles. https://clusterbusters.org/forums/topic/1308-d3-regimen/ With all of that said (suggesting that treating your CH more effectively is likely to reduce your anxiety), anxiety and fear are things that many people with CH experience. And, yes, also depression. It has effects that are very understandably like what we call here PTSD -- post-traumatic stress disorder. Others might talk about how they cope, but I will say again that there are basic things you can do to make the experience less terrible. Some people find that psilocybin ("magic mushrooms") has had a very positive effect related to their emotional symptoms (and it also actually treats CH). You would have to decide whether you want to go that way. I'm not recommending it for you; just passing along the information.
  5. Do you mean qty 200? (I assume qty means "quantity.") 20 RC seeds wouldn't be nearly enough; starting dose these days is 50 or more, and I'd say most folks get up to 80 or more pretty quickly after realizing that they get no psychedelic effects from 50. Psychedelic effects aren't necessary for the seeds to be therapeutic, but they are a reason why some people like to start lower and see what happens. Some people even recommend a starting dose of 100 (though I'm not one of them).
  6. Thanks. 6 is considered a lot of HBWR. The hard/solid part is the outer shell (the hull); the actual seeds are inside that. I'm not sure what you got from this dose. I've encountered HBWR that were solid (not as solid as the shell, but solid) inside, and completely dead. There should have been loose fibers and small particles (the seeds) when you crushed them. A lot of work with mortar and pestle! Since you seem to have received some benefit and experienced some effects, something must have been going on. A lot of people find rivea corymbosa seeds considerably easier to work with (and, at least as I understand it, it's the same LSA).
  7. Nice, nice, nice news! I'm always interested in seeds . . . How many HBWR did you use? Did you just grind it up in some kind of coffee grinder/blender? Would you mind just briefly describing the side effects?
  8. e'head, I hope your oxygen works well for you. If it doesn't, please check back with us for some possible tips. It's not clear to me what you mean when you say you just ordered oxygen. If you're looking for a great treatment with no side effects, oxygen is it, but of course it only aborts attacks, it doesn't prevent them from happening. Like I say, please keep us informed about your O2. When you have it working properly, it will very significantly reduce your need to also use a triptan. The vitamin D3 regimen (lots of pills, but nothing pharmaceutical) is also a good option, which might actually be good for you: https://clusterbusters.org/forums/topic/1308-d3-regimen/ You should probably check to be sure you're not unnecessarily triggering any attacks. A lot of foods typically consumed by young folks tend to have MSG in them, for example. https://clusterbusters.org/forums/topic/4568-triggers/ A 5-Hour Energy drunk down at the first sign of an attack can often reduce the severity of the attack or even abort it. The stuff in there might not be particularly good for you, either, but you have to make the tradeoff between screaming and squirming around on the floor wishing you were dead and addressing the frequency and severity of your attacks. There's no question that some meds are, as you say, "detrimental," but they probably have relative degrees of detrimentalness. I'm not sure what urs means by "slapbacks" from nasal triptans or injected ones. There is some evidence that they might have detrimental effects, such as causing subsequent attacks, making attacks worse, or lengthening cycles. There are also people who never used triptans who experienced all those things. There are people here who would tell you never to use a triptan, and there are others who will tell you that the tradeoff between having a multi-hour attack and aborting it with a triptan is easy for them to make. Some people find that putting their feet in a bathtub of very hot water helps calm an attack. You might find some interesting other ideas in the ClusterBuster Files section.
  9. Since you say you don't want to use triptans, this might not be very helpful, but as spiny says, with most autoinjectors you can break them open and get three, or at least two, effective shots from each injector. See https://clusterbusters.org/forums/topic/2446-extending-imitrex/ You can also get your doc to prescribe vials of trex and syringes to create your own doses. And you can often get lower prices (not low by any means, but lower) with coupons from sites like www.goodrx.com. Do try the 5-Hour Energy. It does help a lot of people. And keep us informed about your O2, please. Have never heard about the frankincense. If you get a definitive feeling about its effectiveness, please let us know. Some people have found that having their feet in a bathtub of very hot water during an attack will help to calm it. Maybe you want to look over the list of triggers here, in case there might be something else that's bringing on so many attacks. https://clusterbusters.org/forums/topic/4568-triggers/ Bless you a hundred times for your willingness to do the psilo trial.
  10. F'T, some thoughts. What's your total verapamil dosage? 960mg/day is sometimes needed for effectiveness. Drink down some caffeine as you start on the O2. Can be coffee, but an energy shot such as 5-Hour Energy is stronger and usually better. Cover any open holes in the mask and be sure you have a snug fit. Get deep breaths out and in. Start with a strong breath out. The idea is to get as much O2 into your lungs as possible and expel as much room air as possible. Start the D3 regimen. https://clusterbusters.org/forums/topic/1308-d3-regimen/ What form is your sumatriptan in: pill, spray, injection? Injection is the only one that works reliably for most people (sometimes the spray does). All that Motrin is really bad for you and almost certainly doesn't help. I get the desire to do something in order to do something. Some people find that melatonin at night helps, starting at about 9mg and working up. What's the trial you're signing up for? You might think about this: busting is demonstrably effective. The drawback for most people is the same as yours for the trial -- having to quit the triptans. The somewhat scary part about a trial is that you might end up with a placebo that doesn't help you at all. With busting, at least you know you're using stuff that has been shown to work. Busting with seeds is almost completely legal, easy to do, and has no psychedelic effects. So I'd consider that ahead of joining the trial. Read about busting in the numbered files in the ClusterBuster Files section. Family is always an issue. I've been amazed at how many people hide their CH from their families. You are fortunate (as you know) to have that support; it's not always like that. But of course the best solution is to do all the right things to be suffering less and less often. I think the good people here can help you with that.
  11. Hopefully my notes in blue above will show up.
  12. You are such a great resource, Pixie! Thank you -- again.
  13. B'H, So sorry about that lack of success with oxygen. I keep trying to think of other oxygen strategies, but it sounds like you've given it the best try you can. You might consider an energy shot such as 5-Hour Energy instead of the Red Bull. Those little 2-ounce shots actually have considerably more caffeine and taurine than an 8-ounce Red Bull, so you might abort better and have less beverage sloshing around in you. So, I have to ask this, and please forgive me if you've been down this road, too. THE CH "lookalike" condition, paroxysmal hemicrania, is not helped by oxygen or triptans, but is sometimes treated effectively with steroids and verapamil, so it kind of matches your response profile. (The standard treatment, highly effective, is the drug indomethacin.) Do you think there's any chance you might have that and not CH? https://www.ninds.nih.gov/disorders/all-disorders/paroxysmal-hemicrania-information-page
  14. Nice to wake up on a Saturday morning and see that the amazing spiny has already done what needed doing. This is the file about splitting Imitrex injections: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ This the mask she referred to: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit This is an alternative approach to using oxygen, not requiring a higher-flow regulator or the special mask, that has worked well for many: https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/ With more effective oxygen, the D3 regimen, and the other strategies spiny mentioned (energy shot, melatonin), things should get a lot better. FWIW, the agents used for busting don't show up on any standard drug-testing panels. In the file about LSA, you'll see that the seeds are legal to purchase and legal to possess. He could also try kudzu root, which is 100% legal and has been shown to be quite effective.
  15. Can you make it to the CB conference in Chicago, 9/14 - 17?